A place for couples dealing with illness to find resources and advice, hear stories, and discover support. Whether the illness is chronic or acute, the result of disease or accident, couples can learn strategies for coping with the changes illness brings into our relationships and our worlds.
The information provided in this blog is for educational and support purposes only. It should not be used as a substitute for seeking professional care.

Thursday, August 6, 2009

Advice Columnist Tells Well Partner To Leave

Advice from a Boston Globe columnist, Meredith Goldstein, about the well partner separating from the ill partner. I would be very interesting in hearing your perspective.

And very interested in hearing from those well partners who did choose to leave -- what was the tipping point for your choice and how ha our life been since the separation?

And I would be interested in hearing from those ill partners - what was your life like after the separation?

HERE'S THE ADVICE COLUMN:

Q: I enjoy reading your columns everyday -- it provides such a welcome distraction at work. I find myself in a difficult, sad situation, and would appreciate any advice you and your readers have to offer.

I have been in a relationship for about four years. My boyfriend and I are very young -- we started dating when we were about 20 -- and we’ve had a great relationship and are very much best friends. We agreed early on there was no need to rush and get married, but we frequently discussed our desire to be together for a very long time. Two years ago we moved in together and it was wonderful; we had a great life, great experiences, great friends.

My boyfriend has always had health problems, but a little over a year ago, things really got bad. There’s no need to go into the details, but suffice it to say, it isn’t going to go away, and it has impacted every aspect of our lives. Because it is often difficult for him to move around, we started going out less and less. Our home became less social as he didn’t like having people over as much. His interests narrowed, his mood soured (he’s being treated for depression). Our sex life dried up. I took it upon myself to do whatever I could to make life better for him; I have taken on more and more responsibilities; I physically take care of him; and I have been patient, accommodating and understanding as our lives changed.

Now I’m at a point where I have accepted that this is not temporary, and I feel increasingly hopeless. I have all of the responsibilities in the relationship, with no help from him; I ask for help when I think it is reasonable, but the general rule is, if I don't do it, it won't get done. What's more is that we basically have no lives. His only real interest now is sitting on the couch watching our favorite TV shows, and it’s the only activity we really do together anymore. I’ve told him on more than one occasion that I miss the things we used to do together and with others, and that despite his pain, I hope we can try to have some fun again, even if it’s limited. He tries sometimes, but even if he manages to get out the door with me, we usually can’t stay out for long before he wants to come home. I’ve tried to broaden his interests beyond the TV even within our apartment (books, board games, video games, anything) but that hasn’t really worked either. His interest in other people has also reached new lows, so socializing beyond the infrequent visits of our few remaining close friends is rare. I have started going out on my own from time to time just to escape the negative and monotonous atmosphere of our home (I always make sure to invite him), but it’s not the same, and since our jobs take up much of our time, it doesn’t feel right to spend a large portion of my limited free time elsewhere. I’ve brought up all of these problems separately on numerous occasions, but I have to be delicate about it because he quickly begins to feel massively guilty and depressed, and sees himself as inadequate.

I feel isolated, stuck, and sad, and have been fighting the urge to flee. I think he may suspect my feelings, because he is reminding me more frequently how he loves me and couldn't go on without me. But I just don't know. On the one hand, I have all the responsibilities of the relationship, and none of the emotional or physical joy that should come with it. I don't think he is either willing or capable of living beyond the lifestyle we currently live. I’m 24 and I am terrified at the prospect that this is it, that this is going to be my life. On the other hand, he’s still my best friend, and I love him and deeply care for him. He’s in pain, both physically and emotionally, and he needs me. If I left, it would break his heart, and when I think about the reality of that, it absolutely shakes me.

What should I do? It’s been over a year, and I feel I have tried everything, and things are not getting any better. Am I a horrible person to be thinking about leaving him?

-- Stuck and Hopeless, Boston

A: S&H, You’re allowed to leave. You’re 24. You didn’t sign up for this. I fear the longer you stay, the worse it will be when you bolt.

He’s your friend. You owe it to him to be honest. Tell him you’re not up for this. You can’t commit to this life, at least not as a romantic partner. You can explain that part of your decision is about age and place in life. I truly believe it’s not just his illness. You want to discover more of the world. You want to get to know yourself better. That's what unmarried people do at your age. You will feel like a jerk -- but being a jerk is better than being a martyr.

Give him the whole picture. Explain that you’ve thought about leaving for a number of reasons, but that his health and depression has kept you around. Tell him you've lost track of how serious the relationship would be if his illness wasn't a factor.

If he can’t get his mind around losing you -- if he begs you to stay (and he probably will) -- assure him that you’ll be there as a friend if he wants you around in that capacity. Remind him of all of the other people in his life who care for him. Tell him to seek out as much support as possible. Dealing with a chronic is miserable. He needs to learn to cope without alienating everyone he loves. If you fear that leaving him will send him into a dangerous depression, talk to his friends and family -- even his doctor. It's their job to get him through this.

There’s no way to avoid feeling like a bad person. It's going to be ugly and there's going to be a lot of guilt and shame. But that's life. You can’t always be the good guy. And frankly, I’m not sure that sticking around would make you the good guy. It would just make you miserable.

11 comments:

"Dealing with a chronic is miserable". This line leaves me colder than cold. As a "chronic" in my 20s who has come through illness in a relationship that is stronger for it, I find this view stunningly devoid of compassion or imagination. This is not to say that the relationship in question should continue, necessarily, but this statement makes it sound as if all relationships involving illness are doomed to failure. I hope that before this young woman makes her decision, she reaches out for support from other couples who have come out the other side... if only to gain a more comprehensive view of what she and her partner have been facing. My partner and I have faced debilitating chronic illness for four years, and although plenty of the experience can be described as "miserable", a lot more can be described as "challenging" "enlightening" and "strengthening".

When I saw the title of this post, my knee jerk reaction was "how could an advice columnist counsel such a horrible thing?" But, then I read the letter from the person seeking advice. I don't think the chronic illness is the total issue here. The boyfriend is well enough to work (she notes their jobs take so much of their time). So, it appears that his reaction to his illness is prompting much of the issue -- not contributing in equal measure to the household's upkeep, not participating socially with others and such. It'll be hard for her, but I agree with the advice. She should leave now.

BTW - I am a well spouse who stuck around. My partner/wife was diagnosed with MS about 8 years into our now 28 year long relationship. I'm glad I did.

slizabeta - thank you for your articulate and powerful response. My partner and I have both become bigger people through living with my condition. I wish it had happened another way, but this is our path.

Cranky - I'm glad for you that you found your way to live with chronic illness in your relationship. And I appreciate your insight that something more is probably going on in their relationship. There usually is.

"Dealing with a chronic is miserable"?! OMG. The whole thing just made me cringe, but that line pissed me off.

Yes, in some ways I feel that the chronically ill partner is better off on his own rather than with someone so resentful. But I'm grateful every day that my husband hasn't (yet) given up on me despite my debilitating chronic illness. It's hard on him. It's hard on both of us, and our young daughter. But it's not like I chose to get sick. And it's not like this guy did either.

In the first place, this is way too serious a life decision for some off-the-cuff newspaper columnist advice.

But as long as we're playing that game, here's mine: First, I note that he works, apparently full time. My bet is that, with his illness, the job is taking everything out of him each day and week, leaving nothing for a social life or sex life or housework.

My first question then would be whether he has revealed his illness at work and received accommodations, or whether he has considered scaling back his work or even going out on disability. Or perhaps a different line of work would be a solution: Has he contacted Vocational Rehabilitation?

What accommodations have they made in terms of the residence--e.g., move from an upstairs to a downstairs apartment--or his daily routine (does he drive himself to work? is that exhausting? is he using public trans? do they need to move closer?) to reduce painful activity and conserve energy? Does he need assistive devices? Therapy?

Have they been flexible about resuming their social life as a couple, or are they giving up if they can't do it exactly the same way as before? I'd as the same question about their sex lives. They need to try some creativity before they give up on the relationship.

And if he can work, he doesn't need a nursemaid 24/7 and she should be getting back to her own life some nights and weekends. Allowing herself to be chained to the couch along with him serves no purpose and appears to be doing them a lot of damage.

I gather that he is in chronic pain, and that his depression is not well-managed with medication. She, apparently, hasn't a clue what living that way is like, because she seems to imply that it's something he could change if only he tried harder. (She is, for example, complaining about what might be the sedating effects of pain meds as if he'd gotten lazy.) She would really benefit from a partners' support group, an online community, and/or some reading on his specific disability and on depression in general.

As for the housework, they can hire a maid. He may qualify for a Home Service Aide from the county, or via his health insurance policy. Or, again, they can get creative: He may not be able to do his 50% but there may be some things he can do, and they should try to figure those out.

She might benefit from some counseling not only to make this momentous decision but to examine some things about herself: Is it realistic to expect "joy" in a long-term relationship? Does she have the perseverence, loyalty, and commitment necessary to a marriage? (No, this couple isn't, but at 24 they sure could have been, and is this how she would react?)

Disclosure: I was already disabled when my husband and I met. After nearly 30 years together, he was diagnosed with cancer and is currently temporarily disabled by the treatments. So I've been on both sides of this situation!

"Dealing with a chronic is miserable"? I was sure that was a typo, and was supposed to be a sympathetic statement like, "Dealing with a chronic illness is miserable." I am not "a chronic", and neither is my husband or this boyfriend fella. And don't these two women think he's miserable? He doesn't have a sex life or a social life any more either. He knows he can't pull his own weight in the relationship any more: Don't they think he feels frustration and shame and rage?

I understand that she thinks she's too young to go without sex and other kinds of fun, but she's looking at using an escape hatch that is not available to him. My personal, completely unprofessional, opinion is that she needs to pull on her big-girl pants.

Wow, that is pathetic, sad, and cold. I think both partners need to seek wise counsel (not just from a columnist who doesn't know every single detail). I think the girl needs to really consider if a marital commitment to him is something she's capable of and if not, perhaps it is time to go. I think that's really sad. It's always good to see couples fight to the end, through the thick and thin. No one asks for this. It strikes wherever and whomever as God so allows. I think the guy needs to work hard to claw his way out of depression (which I know is incredibly hard in this situation) but if he really, truly loves her, he has to try. I don't think all blame is on her necessarily, but obviously he can't do as much as he used to and that needs to be okay. If they really, truly love each other, just being together even if that's doing nothing, is enough. If not, it's time for her to go, stop leading him on, commit to just being his friend, and let him move on with his life. Hopefully through that he'll also find that he can do more when he pushes himself to when he's on a good pain day (as we all know, in some cases that's okay, and other times you just can't even push yourself), and then he'll find someone even more committed than this girl.

Either way, I think it's a sad situation. I'm sure it happens every day around us though without being fully aware. It's a hard lesson when this reality strikes home, and without the full commitment of marriage (and sometimes even with that), you may not make it. Tough world. I hope they make it, but I think without wise counsel and help, this couple won't make it. But I hope she doesn't listen to the columnist. Good grief.

Granted that the advice columnist is an ass, she's giving good advice, in this situation.

The writer has not yet committed with a marriage vow. She is young. She is unhappy in her relationship (and might have been so even without the chronic illness and depression interfering).

Yes, they could work at finding better meds/work accommodation/etc. for the boyfriend, but he certainly doesn't seem motivated to do so, and that HAS to come from him. It sounds like major depression on top of everything else.

She's asking for permission to leave. She shouldn't need permission. It is always an option.

Virginia - thanks for such a thorough analysis. You really bring out perspectives that are not evident on first reading.

Rochelle - you really express how tangled their situation is and how illness brings such complicated grief into our lives.

Tzipporah - yes - I am perpetually awed by my partner's commitment to stick with me through the awful times. Your words remind me of something I once read - it takes two people to make a relationship, but only one to end it. She can walk at any time - why is she asking a stranger for her opinion?

I got very lucky and got pregnant a year after being diagnosed with Atypical M.S., CFIDS, Neuropathy and Chronic Myofascial pain and had healthy twins...

Another year later, I separated from my husband who blamed me, was wonderful in front of doctors but verbally & emotionally abusive to me at home, left me for hours & hours if I was bleeding out with no help, stepped over me if I was crawling to the bathroom on my hands and knees... I won't get more specific but thanks to a great therapist I realized he was Narcissistichttp://narc-attack.blogspot.com/2006/08/how-narcissist-reacts-to-disaster-in.html

There were so many other clues but this was the clincher. It was another 5 years before I was allowed to and able to move out.

This advice columnist is somewhat heartless. While some of the advice is good... she isn't really telling this person how or why the 'running from the sick person' is bad. Hopefully the advice-asker isn't Narcissistic. They treat the chronic like crap.

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About Me

In November, 1999 I was whacked with a mysterious chronic pain syndrome that took me out of my life. With the help of my husband, my dog, and a combination of western and alternative approaches, I have a new life that includes working, writing, mountain climbing, smiling, and managing pain. I learned a lot along the way, especially about illness and the couple relationship. I'm also a psychotherapist, a business consultant, and have written a book about couples and illness, which was published in March 2013 (Roundtree Press)

“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”Susan Sontag